Waiting for lung transplant, mother fills journal with memories for the future

LAURA GREENSarasota Herald-Tribune

Published Monday, March 17, 2003

BRADENTON -- Tiffany Reid prepares for death every day.

The 31-year-old has already written her obituary -- she wants it to read that she "croaked."

And when she has the energy, the Bradenton woman fills journals she bought for her three children, each in their own favorite color, with her memories of them as babies.

She wants Damon, 9, Zoe, 6, and Nikita, 4, to have a way to learn about their childhoods in case she's not around once they're old enough to ask. Reid, who was born with cystic fibrosis, is on a waiting list for a double lung transplant. She doesn't know when the day will come or whether the surgery will even be a success.

Though she's doing all she can to stay healthy, Reid is reluctantly preparing for the likelihood that she won't live to see her children grow up.

"If something does go wrong, I don't want them to feel abandoned," she said. So she writes in the books. It helps pass the time, but it also comforts her knowing that she's giving her family memories and final instructions to help them keep going after she's gone.

She also has a journal for her husband, John. In it, Reid writes down everything he'll need to know if she dies or is unable to make her own medical decisions.

It includes her wishes should something go wrong with her transplant, like in the recent case where an error was made at Duke University Medical Center in matching the donor's organ to the recipient, Jesica Santillan. "I would never have gone for a second transplant," Reid said.

Jesica, 17, died shortly after undergoing a second heart-lung transplant.

"There's almost no chance of surviving a second one that close," Reid said.

The insurance her husband carries as a school custodian will cover the surgery. But the family must pay, on his salary alone, part of the cost of 24-hour nursing care she will need after surgery, and child care for her children while she recuperates. Because of the risk of germs and infection, she'll have to live away from her family near Shands Hospital in Gainesville, where the transplant will be done.

Ballard Elementary School recently held a fund-raiser for the family. Damon and Zoe are students at Ballard and Reid's mother, Susan Bischoff, teaches there.

The total collected hasn't been tallied yet, but the Reids are hoping to collect more.

Even if the family raises enough money, Reid will face a difficult surgery and recovery. Lung transplant patients have a 70 percent chance of surviving for a year after surgery, but that drops to 48 percent after five years and falls about 5 percent each year after, according to the Cystic Fibrosis Foundation.

So Tiffany Reid thinks about what her children will want to know about themselves when they're grown.

In a yellow journal, Nikita's favorite color, her mother wrote: "You are my last baby and I love you to death, but you, frankly, drive me nuts. You are always doing things you know are wrong."

Tiffany Reid spends most of her day in bed, where she's hooked up to oxygen 24 hours a day and a bag of liquid antibiotics most of the time.

She is still recovering from a stroke in 2000, and said she wouldn't go through with a transplant if it weren't for her children.

"My kids are so young and they need a mom," she said. "I have to at least try it."

The Reids have decided to be honest with the kids about their mother's genetic lung disorder and her chances of recovery. Her husband's mother died of cancer when he was 8. At the time, no one had told him she was seriously ill. All three Reid children have been told there's a chance she won't return from the surgery. Zoe often hugs her mom and tells her, "If you die, I would miss you the most."

But among the siblings, Damon, the oldest, carries most of the emotional burden. Sometimes, Reid said, she catches him watching to make sure she's still breathing. One day, he kept shaking her awake because he was worried.